Kirklin Clinic Head & Neck Cancer Support, Birmingham, AL
Pat Sanders, Editor.
Distributed by American Cancer Society
By Michael Dreisbach
What do you need to do if you are at home and you, your spouse or significant other has a medical emergency? What do you do if you are a new “lary” and have not quite master your new “voice” and your spouse needs medical assistance? What if you are able to speak but you feel that the dispatchers at the 911 center will have a difficult time understanding you? The answers are out there and with just a little imagination we can overcome these challenges.
I have seen some postings on the WW site that discusses what our spouse’s will and can do for us, the “lary.” The suggestions are pretty much right on target. Let’s now turn the table and look at what can we do if they are the ones needing assistance. Let’s look at what the entire household can do in this situation. Calling 911 is stressful. It is usually done when something has gone terribly wrong and assistance is needed quickly. Some folks handle this stress well, others panic. I know. I was a 911 dispatcher and supervisor for over 13 years. I could hear that panic in their tone of voice, rate of speech etc.
Some folks have alarms installed in their homes that provide them with a welcomed sense of additional security. Should this be the case make sure that your alarm company has all the up to date information available. Check with them periodically to make sure they do have the correct information and always advise them, also in writing, of any changes that do occur. I cannot stress how important it is for each of you keep the alarm company up-dated with any changes in your medical situation. Have your alarm company “flag” your address so they will know immediately that the subscriber/resident there has special medical needs. Each alarm company has different procedures for handling medical emergencies so be sure to fully understand how they will respond and your responsibilities. If a medical emergency happens activate your alarm system. Should your alarm system be equipped with two way voice monitoring you may have an advantage. When your alarm is activated the alarm-monitoring center can speak to you directly over the alarm system. They will be able to ask questions and obtain your responses. They will not have to telephone you, wait for an answer etc. Regardless of what type system you have you can still follow some of the tips provided here.
When you dial 911 numerous things are placed into motion. 911 dispatchers will usually answer the phone in the following manner: “911, what is the exact location of your emergency?” They do this to confirm the location of the emergency situation since the location of the emergency might not be your home address. They will still confirm your street address as part of the Emergency Medical Dispatch (EMD) protocols. A cell phone or a phone system via the Internet such as Time Warner or “vonage” might not generate the correct street address information. Sometimes cell tower sites show up as the address. Systems such as “vonage” and others early on were involved in litigation over failure to provide accurate street address. Personally, I strongly recommend using a regular hard landline provider such as Bell South, Embark (Sprint) etc. The correct address to respond to is the first part of the scenario.
You might also try contacting your local 911 center via their non-emergency number. Inform them of your particular situation. Ask if it would be possible to have your address “flagged” so that if and when you call they will know in advance that a resident at this location has special medical needs. Follow up this phone call with a written letter outlining your situation. Some 911 computer aided dispatch systems are not able to perform this task. It is still, however, worth the phone call to find out whether they can or cannot, and always follow up with a letter. I would also strongly suggest advising the closest fire department station and EMS station of your situation. A personal visit would allow them to not only put a face with a name but they could actually hear you speak. It is would also be an opportunity to educate them on what an actual stoma looks like. Seeing pictures in a textbook is one thing, but seeing it up close and personal will help drive the point home.
There are also many different devices that can assist the responders in locating your residence more quickly. The first is rather simple. It can be found at your local hardware store or the Home Depot. It’s a specially made socket adaptor that fits into your outside porch light. When you flip the switch once it will act just like a normal porch light. However, when the switch is flipped again (twice), it flashes. It will continue to flash until the switch is again thrown to turn the light off.
Another device is the “911light.” This device is tied directly to your phone and the accompanying strobe light via a remote signaling device. This device must be located in close proximately to the light that comes with the kit and your phone. As soon as you dial 911, this device activates the strobe light. Again a steady flashing light is of great help in assisting the responders in locating your house quickly when time counts.
Should you be the patient you have at least three options. The first is to attempt to communicate with them as you normally would with anyone else via the telephone. A lot of dispatchers have not had the experience of speaking with laryngectomees over the phone. Those utilizing an electro larynx may have a more difficult time than those utilizing a TEP. If you are an electro larynx user and the dispatcher advise you that they do have a difficult time understanding you remember to turn the volume down on your electro larynx. Try speaking very slowly and as clearly as possible.
The second still requires you to dial 911. When the dispatcher answers and states: “911, what is the exact location of your emergency?” say nothing. He will usually ask the question again. Attempt to communicate somehow with the dispatchers. Make some type of sound and if necessary some 911 centers will ask questions requesting you to “tap once for yes and twice for no.” Another option is to obtain a TTD, (text telephone device) device from your phone company. You may not be able to speak but you might be able to “type” what is happening with you presently. 911 centers prefer NOT to lose contact with a caller once the call has been placed. If all else fails hang up after saying nothing. The 911 center will call you back. When this happens DO NOT ANSWER THE PHONE. Let it ring. A majority of 911 centers are required to, at a minimum, send a police car to investigate a 911 hang up. Regardless of what you have done while on the phone with 911, if you are able, go unlock and open the door. Gather your medications and have any other pertinent information readily available. If you have the “911light” it will be already activated. If you have the other style, activate it now. Sit by the open door and watch/wait for the responding officer.
The third is to have readily available a tape-recorded message that all you need to do is press “play” once 911 is dialed. A relatively inexpensive cassette recorder can be purchased for as little as $20.00. Nothing fancy, just something to get the job done. The message should go something like this: “This is a pre-recorded message. I am in need of a medical assistance. My street address is 2625 Boxwood Dr. My name is Mike Smith, I am a 55 years of age, and I am a laryngectomee. I breathe through an opening in my neck called a stoma. I do not breathe through my nose or mouth. The front door will be open, and the porch light on/flashing. I have a pre-prepared emergency information sheet and this along with all my current medications are in a basket on the kitchen counter. I will attempt to put the dog in the bedroom”
The dispatcher will have obtained pertinent information from this that they will pass onto the responders.
Some medical info should oxygen need to be administered.
How to gain entry to the house without breaking the door down.
Where to find an emergency information sheet.
Where to find your medications.
Lock up the dog. You need help and when they come to help, the dog will view them as strangers. When they begin to work on you or another family member, the dog WILL get protective of his owner. There are numerous reported dog bites on EMS/Fire/Police Dept. workers because “Fido” thought they were harming their master.
Following this they will attempt to have you answer some additional questions that will aid the responders. If you have played the tape they may/will ask additional questions to ascertain whether you are conscious, having any difficulty breathing, bleeding severely or suffering from chest pain. Answer the best that you can with simple one-word responses if you think they will have difficulty understanding you. Again if you say nothing they will more than likely send the fire department (these guys are normally EMT’s), the police department, (these guys are usually cross trained in basic first aid which includes rescue breathing and CPR) and of course EMS. Your “tape” can be tailored made to fit your specific situation. Example: NO dog, no need for the dog sentence. Always try to position yourself in or near the open door so that the responders can readily see you when they approach the residence.
The pre-prepared Emergency Information Sheet I mentioned will be discussed in next month’s WW Journal. This sheet does require you to fill out pertinent information about you, your medications, insurance, relatives etc.
What happens should the victim be your spouse or significant other? This brings up a whole different set of issues. Again if an alarm company monitors you, they should have very specific instructions, provided by you, on file as to what needs to occur. If you, the laryngectomee, are placing the call for your spouse you may use a very similar set of taped instructions as listed above. The nice thing about a tape is that it has two sides. Just flip it over so that all your spouse’s pertinent information is now on the recording. Make sure you label whose side is who.
Again the folks at 911 will try to ascertain additional information from you. They may attempt to give you some “pre-arrival” instructions so that you can provide some assistance prior to help arriving. Should this be the case listen carefully, follow their instructions if at all possible and answer as best you can with simple one-word or tapping responses. If you feel uncomfortable or are unable to follow their pre-arrival instructions let them know somehow. Recently I had to provide my wife with some emergency first aid when she fell. It was difficult to provide the first aid and still tell the folks what happened. This is where a third hand would have come in handy. Using an electro larynx with one hand, holding the phone in the other while the third hand was attempting to control the bleeding.
Should your spouse suffer a heart attack and needs CPR, this will be challenging. We as laryngectomees are probably great at giving chest compressions but somewhat weak on rescue breathing. If this is the case having an “ambu” bag in the house will be helpful. This is the bag that we have all seen on television when they say they, the medical staff, are “bagging” someone. This will supply the oxygen that would normally be given to a cardiac victim via mouth to mouth, something which we aren’t able to do any longer. Please check with and obtain the necessary instructions from your local Red Cross or American Heart Association for the proper use of this piece of equipment. They may also know where one can be purchased.
Having to call 911 for any emergency, medical or otherwise can be a stressful situation. Our ability to communicate with the dispatchers might be easy or difficult. Just like being a laryngectomee each of us is the same but different. Hopefully, the tips provided on what and how to perform this hopefully unneeded task have proved helpful.
HOW ONE LARY WENT "BACK TO WORK"
by David Ross
There have been a lot of postings on Whispers about "when can I expect to go back to work", "how long will it be before I can talk well enough to go back to the office", etc. All of this chatter got me to thinking about the first few weeks following surgery and I realized that, for me, these questions never really arose. There was, however, a situation that was similar to the "going back to the office" syndrome.
Although I had retired four years prior to my full laryngectomy, I had become active in the local politics of the small town in which we live and the fact that I had just gone through major surgery and was "different" than before just never caused me to pause and think "I can no longer be me". SOOO, I just kept on doing what I've always done and that is being a part of the world around me, which meant, in my case, going to the public meetings and speaking my piece.
First, let me point out that I was, and am, one of the fortunate ones that experienced a relative easy recovery and was blessed to have a fairly good TEP voice only two weeks after surgery with no post-op problems of consequence. With this perspective, please know that I do understand that not all new Lays can jump back into their pre-op routines as if nothing had happened, BUT I am convinced that a Larry's perception about how different he or she may be from the "norm", can and does have a great effect on their activities.
As I learned from WW, the road to recovery is normally not a "normal" process (is that bad grammar, or simply the way it is?). Nonetheless, I have always believed that most of the beds we lie in are made by ourselves and so, even though I knew I should have stopped smoking years before my lung surgery in 1997 (four years prior to my first bout with laryngeal cancer) and should not have exposed myself to some of the other carcinogenics so prevalent around me, I am inclined to forgive myself of my human weaknesses and go on with my life. No one outside my family and closest friends really knows or understands what's going on with me and they are, thankfully, loving and willing to accept me as I am, so I just carry on as best as my physical condition allows.
As a result of my easy recovery, my family and friends acceptance of my "condition" and my undying will to get on with my life, here is my "return to work story":
About three weeks after my surgery (one week after having my TEP inserted) there was a meeting of the Economic Development Board in which one of the topics to be discussed was a project which I had personally initiated some months prior to my surgery and I felt that I needed to provide information to the Board so as to gain their support for the project. Consequently, I found myself speaking to a group of people in a public format knowing that the sound and quality of my voice was, to say the least, unusual. Additionally, I was standing in front of them "sticking my finger in a hole in my throat" which I am sure some of the folks found to be a little disconcerting. In spite of these "abnormal" circumstances, the group was cordial and VERY attentive which I have since learned is an advantage that can be realized when one speaks with a "handicap". Obviously, the fact that my audience was a small captive group made my communication with them relatively easy; nonetheless, believe me when I say I was a bit nervous when I started but five minutes later realized that what I was saying was of greater importance to them than how I said it.
This then, was my "first day back on the job" -- three weeks post surgery!! This was followed by my applying for and being appointed to the Planning and Zoning Board about two months later and I haven't looked back since. I firmly believe that the public's acceptance of my "condition" is directly related to my attitude that I'm no different than before, other than my voice is different. Well guess what -- the vast majority of the folks I come in contact with while sitting on the P & Z Board have no idea that I ever had a different voice and they don't care how I sound and neither do I so long as I can effectively communicate.
To all of you wondering about "going back to work" I will only say: just be YOU the best you can and don't concern yourself about how others may feel. It is, after all, your life to live.
Kirklin Clinic Head & Neck Support Group
No meetings until further notice
In the interim, we suggest that you join WebWhispers if you have an email address.
We are also invited to attend an All Cancers group with a luncheon every third Tuesday.
Call or email Pat Sanders if interested.
B’ham: Pat Sanders, 205-980-8416; firstname.lastname@example.org